About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, October 25, 2009

Hi Everyone!

Just a really quick note to tell y'all that our computer crashed! It will probably be another week before we are back on line and with regular e-mailing! We miss all of you! Mark and I will head to Colorado on Nov. 10-12th! I'll write more when we're back on line - I'm doing this from my moms house!Love,

Wednesday, October 14, 2009

Hi again! I'm back to add more photos that were taken during the fun time that was being had for Hanz's Birthday Party! We have enjoyed Hanz so much! He is smart and cute and great company! I was glad that Hanz's guests made it to the party, as it was raining pretty hard out toward the island, where his guests were coming from! This was the first "puppy party" that we had either given or been to and we had lots of fun with it too! Picked up a few party favors @ Party City a few weeks ago @ very reasonable prices! A plastic table cloth with puppies all over it and little paw prints! A few balloons, paper plates and napkins (w/the same designs) and some goody bags for the guests that had little surprises from Petsmart!

There was one point during the party that Penny wore her party hat on her butty butt butt! Greg cut a hole out for her tail and she sported the hat that way for a bit, ha, ha! I'd like to keep up w/keeping the house clean, so we can have people over more often! I enjoyed having my family come by and of course since it's Hanz's home too - he can have his cousins over whenever he wants!

I got a photo of Hanz w/one of his new favorite toys - the moose that mommie brought him from the Colorado airport! It's just the right size for Hanz to grab in his mouth while we chase him 'round and 'round!

The guests all behaved well and actually, it was the Birthday Boy that decided he was going to do his business wherever he wished! No biggie - it was his party after all! I'm sure Penny and Hula will find their way to our place some time during the holiday season! I guess that is enough partying for now! Mark needs to change my dressing and then we're off to bed! Good night all!

Tuesday, October 13, 2009

Hi Everyone! We had one of the best days ever on Sunday, as we celebrated our baby Hanz having a birthday party! I wanted to do something special for him, as he has brought us so much happiness during a time when we could really be upset with all the health problems I've had! We had invited my mom, of course - Hanz loves his Grandma and gets so excited to see her! Mom had ordered Hanz one of the cupcake critters that they make @ Janets Cakery to look like your pet! Mom walked in with the cake and some balloons for Hanzie, and soon, the Celia and Greg arrive with Penny and Markie brought Hula!

Mark had really decorated nicely with balloons and streamers, along with making a white cake with buttercream frosting, coffee and champagne! Greg went and got pizza and chicken wings for everyone and Mark even whipped up a special dish for the cannine crew that Penny really liked! She licked the plate clean! We drank a toast to Hanz with Asti Spumante and then went back to eating pizza, beer, sodas and cake! Everyone was having a great time and got along really well!

Ok! I have to continue this tomorrow - too much to do still before hitting the sack! More photos of Hanzie's party in the next day or so! Love to all!

Wednesday, October 7, 2009

Hi Friends and Family! How is everyone? We are all doing well! Where do I begin telling you of our latest adventures in CO?! I had pretty much resigned myself to having to have that darned trache I was hoping to avoid - even though Dr. Reed, the Head of Voice and Swallow in Denver, had said it was very risky. I had spoken to Eric, Dr. Yakes P.A. about what my next step would be, as I had started having some bleeding inside my mouth, on the avm side of course, in the back upper molars. Eric suggested I get a second opinion from a doctor that they refer patients to about having the trache. So I set up an appt. to see Dr. Edward J. Hepworth (www.entmds.com) for Tuesday morning. Celia and I flew out of Corpus Monday, mid-morning, to arrive in CO in the early afternoon to gloomy, rainy weather! Our first stop was getting the car rental @ Enterprise. The traffic was terrible and with the rain, it took as an hour to get to where we wanted to go! We decided to have dinner and then check in to the hotel! Watched a little Dancing with the Stars, then got ready for bed - each of us settled in our beds with the latest Diana Gabaldon book, An Echo In The Bone - see photo. Got up early the next morning and had a good breakfast @ the hotel! Ran into Giovanni - the waiter @ the breakfast buffet that we named one of our siamese cats after! He was telling Celia how he has seen many miracles happen for the patients with avm's that stay @ the hotel! We were anxious to get to the doctor appt., but it was 36 degrees out and Celia had to scrape some ice off the windshield! Yowza! We heard the heat index later in the day in Corpus would be 112! Saw a cute Yorkie being taken for a walk - had to go talk to the lady, as I was missing my little angel Hanz! Mark tells me that Hanz kept looking for me Monday night, and kept looking up each time he heard a car go by! I had told Hanz to keep my side of the bed warm while I was gone!Ok! So, we arrive @ Dr. Hepworths office and after filling out some paperwork, we get escorted in to a room and start getting all my information in order. Dr. Hepworth walks in and Celia and I liked him right away! He is super nice, enthusiastic and just seems up on everything! I'll post a series of photos where you'll see Dr. Hepworth putting a tube in my nose and mouth to check my nasal and air passages! The glasses I'm wearing, allow me to see what he is seeing on the screen! He feels my air passages are not compromised, so a trache is not the way to go as far as he is concerned! Wow! He wants me to schedule my next embolization and he wants to be there to get me intubated and see what point I'm @ as far as the embolizations! He drained my ear with a suction tube and put in some ear wash for the ever present infection in my ear! I had been given something similar by Dr. Larkin in wound care in Corpus Christi, but very diluted! This ear wash Dr. Hepworth used was stronger and he wants me to use is several times a day! A prescription of that and some more Ciprodex ear drops that have a steroid, also for the ear infection! Before leaving his office, he said his people will get with Dr. Yakes people and work on getting me the soonest appt. where Dr. Yakes can do an embolization and Dr. Hepworth can be present! By then, the other doctor that Dr. Hepworth works with will be back from Cambodia! I will probably meet with him the day before my next embolization with Dr. Yakes!Dr. Hepworth asked if they could get some photos of me for their files, so that was our next step! Kris was taking my "glamour shots" (I wish!), then Celia got one of Kris and I together! We left the office full of excitement and hope that we were on our way to starting my embolizations again and not having to have that trache! Everyone @ Dr. Hepworths office was so nice and reassuring and that's exactly what I needed! I've needed this break from having the embolizations, but I am sooo ready to get going again! I owe a big debt of gratitude to my friend Carolina - she is a supervisor @ our main probation office and has always been very supportive of my medical situation. She recently got me back on track with my faith by encouraging me to go to adoration. I felt like I was just not going anywhere with my treatments and @ her suggestion, just offered it all up to Our Lord. I had come to terms with having the trache and dealing with whatever came my way, and now I get the great news that I may not need that trache after all!Ok folks, I have got to get to bed! I didn't get to bed until 1:a.m. last night and my poor baby Hanz is already snoring probably! Mark isn't @ that point yet, because that's my job! Thanks so much for keeping in touch with me and for all your love, prayer and support! Much love to all of you!